Monday, July 22, 2013

I'm A Neuropathic Nightmare!!

I saw the Neurologist and found out after many tests, scans, and pokey needle things that I definitely have Peripheral Neuropathy which we already knew but now I have an updated diagnosis of it for my records. What I wasn't expecting was that when I brought the papers home and looked at them I saw that the doctor had written down, "Small Fiber Neuropathy", "Idiopathic Neuropathy" (which just means no clue what caused it), and "Autonomic Neuropathy".

The thing that bothers me is the Autonomic Neuropathy because it's one that affects your organs and explains why I've been getting dizzy a lot. It seems it is affecting my heart although only very mildly at this point. We aren't sure yet what other organs are being compromised yet and I can't say I'm in a hurry to find out.

I also found out that I have to have an MRI and I'm being referred to a pain clinic because she honestly thinks that at this point I'm going to need pain meds. Not what I wanted to hear but also what I already knew too. I've tried all the medications to try to help with this neuropathy and I've either had bad reactions or there is my Gabapentin which keeps me sane and not wanting to gnaw my limbs off but doesn't actually help pain. I absolutely hate pain medications and will have to mentally become okay with taking them so we will see.

Big B and Sis are doing alright and plugging along in this shithole we call life. All I can hope is that they are smarter than I was at that age and make the most of their lives. I want the best of everything for them and it's hard once your children become adults because you can't give them that or do it for them. As adults they have to go get it for themselves. Can't help wanting to care for my "babies" no matter how big they get though. Lol.

Saturday, October 20, 2012

The "Legacy" Continues...

About a week ago I received some good news to balance out the bad news we had received the week before. The good news- my calcitonin levels haven't risen in the last eight months! I was so very relieved to hear this as I'm sure other Meddies can understand.

The odd thing was that I was on the verge of having a panic attack waiting to hear these newest results which is so very unlike me. I have NEVER had anxiety about my results before even if I knew they would be bad! Come to find out, my TSH levels were high and my Endo said that can cause anxiety. That might also explain why I've been having such gory nightmares lately too! Lol

Bad news was that my oldest child (21 year old son) got the results of his 24 hour urine test and we are finally at a point where he needs to have surgery for the Pheochromocytomas that are forming. It breaks my heart that my children have to go through this too but thankfully he has a mama who has educated herself on this who will help him through.

My son has decided to have Dr. Jeff Moley in St Louis do his laparoscopic Pheos surgery. This is the man I wish I had asked to do mine and I know in my heart that he will make sure my son doesn't end up messed up like me.

Big B will have the surgery after the New Year when him, his fiancé, and I will drive to St. Louis. I'm honored that at 21 he still wants me to be a part of this.

In other news- my Endo had me quit my 2 liter a day habit of drinking soda which cut out all caffeine and most sugar for me (yes, I've been a real bitch this week!), my Fibromyalgia is behaving itself, my Peripheral Neuropathy is getting worse all the time, and I think my Costochondritis is actually Tietzes Syndrome due to where my pain is located. The other 2 million diagnosis' I have really don't bother me much so they're not worth reporting.

Ahhhhhhh the life of a messed up MEN2a Meddie....gotta love it! Lol

Thursday, April 19, 2012

To Everyone Who Has Contacted Me...

And not received an answer, I just want to tell you that I am NOT ignoring you at all. I have recently found several emails that were missed in the high volume of mail that my tjcoiner and JoBurzycki accounts receive and I am so very sorry for that. I've also just found out that I should be hitting "Other" when checking messages on Facebook as well because I found several in that folder today. Again, I am sorry.

I want you all to know I appreciate you reaching out to me and sharing your stories. They ARE important to me and know that as I read through the mail I am thinking of you, sending healing thoughts, and looking forward to getting back to you. I'm ashamed to say I even found one email from 2010 in the mess.

So please know. I AM listening and I DO care. Obviously Yahoo and Facebook doesn't though. Lol.

Wednesday, February 08, 2012

Goodbye and Love to Susan/WhyMommy

It is as always with sadness that I tell you we have lost yet another amazing woman to her fight with cancer. Susan aka WhyMommy of Toddler Planet fame lost her battle with IBC (Inflammatory Breast Cancer) on February 6th, 2012.

Susan was and will always be an inspiration to so very many women. Not only did she fight her own battle (through multiple recurrences) but she was also an advocate for woman, a scientist, a renowned blogger, and just all around amazing person. My own experience with her showed her to be helpful, kind, patient, and caring. I feel honored to have known her even the little that I did.

My heart and thoughts go out to her family. Nothing can take away the pain of your loss but know that Susan will be remembered by so very many as the wonderful person she was.

I would like to end with her mantra that is posted on her own blog

"All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others.  For these are the only things that will remain." ~Susan Niebur

Tuesday, July 12, 2011

Dear Body,

I hate you too but I at least TRY to be nice to you so quit being such a painfilled bitch! I don't know if I can ever understand why you felt the need to just quit on so many levels. Yes, we have cancer that can't be cured. Yes, we're missing a bunch of organs. Yes, we're stuck on steroids for the rest of our life and have to worry about sickness. Yes, we have fibromyalgia as well as RLS, Costochondritis, Peripheral Neuropathy, Osteoarthritis, Bursitis, Migraines, and who the hell knows what else. Yes, our life will never be "normal" again. That part hurts and upsets me too. Honestly it does.

But you know what? We're still here. We're still alive to see these kids grow. We're still able to cheer friends on and cry with them when needed. Our eyes work so we can see all the beauty in the world. Our heart works so we can love and appreciate love in return. Our mind may not work as well as we'd like but it remembers our loved ones and our time with them.

We have so much going for us and chronic pain is not the thing hurting me the most right now. It's knowing that you aren't trying to fight anymore. We can't beat this but we can still give it hell. We can still let all these stupid "issues" (we do have enough for a subscription of our own don't we? lol) know that WE aren't quitting or giving up.

I know it's hard. I'm the one inside you crying out most days. I feel your pain and know it's hard but please don't forget that I'm in here too and I want to live. It might not be the life we planned on or wanted but let's still LIVE while we can. I don't want the world to pass us by or leave us behind. I want to be as much a part of it as you can handle. I promise I won't be sad if you do your best.

Just don't give up. Don't quit trying.

Sincerely, The Soul Trapped In You.

Wednesday, May 11, 2011

Goodbye And Love To Sarah of Spruce Hill Farm

It is with much sadness that I tell you we have lost another wonderful, beautiful, cancer mama. Sarah from the Spruce Hill blog's family posted this on Twitter just minutes ago- "Friends: Sarah passed quietly tonight after a long, hard battle. We appreciate all love/support/prayers. Thank you [from her family]". 

I want to send my thoughts, love, and condolences to Sarah's family. She was an inspiration to many many others with cancer and will be sorely missed.

I really hate cancer! Dammit!

Thursday, May 05, 2011

"Average Joe" heroes

 As a little girl, my heroes were Wonder Woman and my cool third-grade teacher with the wild hair. Later, they changed to people like Amelia Earhart, Joan of Arc, and Eleanore Roosevelt. Okay so I still thought Wonder Woman was da bomb too! When I became an adult though, I quit having heroes. There just wasn't anyone who inspired me anymore.

Then I read the story of Kent and Melony on a parenting board I was on at the time. Melony was the mother of fivc (three by birth and two adopted), a talented artist, and she designed the most adorable outfits for kids. From a distance this woman seemed to live a perfectly charmed life. She just seemed so happy and on top of the world. Soon though I found out how truly amazing her story and life really were.

You see, Kent was fighting a Stage 4 cancer and it had been a pretty rough fight for him. Each update told of a body that was getting weaker yet a soul that was still burning brightly and fighting for all it was worth. Neither of them ever complained about anything and Melony spoke of Kent with  so much love that you could actually feel it yourself. Kent showed his love by fighting and refusing to leave his family. All this and more is why they will eternally be my heroes.

Kent taught me that I can never give up because the bottom line is that it's not really about me. It's about my family and loved ones who still need me. I learned to always keep my sense of humor thanks to him. I know now that if he could laugh, smile, and joke with all he was up against then there's no reason I couldn't do the same.

Through Melony, I finally witnessed unconditional love, unwavering faith, and the very epitome of grace. She is the kind of woman I dream of one day being. She never spoke of how hard this must all be on her but instead told about every wonderful and encouraging thing Kent did. 

Thanks to Kent and his amazing sidekick, Melony, I have heroes once again. Even though they don't wear masks, tights, or long flowing capes, my "Average Joe" heroes still save the day. And the greatest part of all is that all they had to do was keep being themselves.

*Footnote* Kent passed away at home holding his wife's hand on September 23, 2005. He is sorely missed and will always be "Superman" to myself and many others.